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Making Progress on this Progression

Dear friends and family and wonderful people whom I’ve never even met,

This is first just a word of thanks for the incredible outpouring of support you’ve shown, yet again, as I had more bad news to share about my cancer journey (read this for the latest update). In a time when it’s sometimes easy to have our doubts about the state of humanity I feel incredibly privileged to be at the center of a process that bears witness to our tremendous capacity for generosity. I often times do not feel deserving of the incredible love and support that comes my way but I am also deeply thankful that it exists, because without it, I would frankly not exist.

Second, I wanted to let you guys in on the plan. I am fortunate, in that, over the last few months and years I have slowly but surely built up a strong team of healers, both traditional and alternative, focused on a range of issues including oncology, chiropractic methods, acupuncture, energy work, nutrition, herbal supplements, etc. I was able to activate that network within minutes of getting the news that my cancer is progressing and had plans moving into motion within hours.

So here is what I’ve got so far:

In terms of the treatments I have been receiving in New York we are going to ramp those up and add a few more things to the mix. The first is that I will soon be taking a trip to Europe to get dendritic cell therapy. In short, it’s a therapy that (won the Nobel Prize in 2011!) increases my body’s production of dendritic cells which are super powerful cancer fighters. I’ll spend about a week and half in Europe in January and then get treated monthly in New York once I return. I’ll also be adding a treatment which will be administered via inhaler and will attract my immune system cells to my chest area which is where all of my cancerous lymph nodes are concentrated.

I will also be changing my diet, once again. I have decided that between now and my next scan that I am going to give a Ketogenic diet a try. This is a diet based on consuming very, very few carbs, no sugar and a lot of healthy fats and protein. I am still vegan so this will be a modified version and will mostly consist of healthy, vegan fat sources, lots of green veggies, and a bit of fish and eggs to supplement. It will be all whole foods, highly nutritious and will have no grains and very few fruits. I’m going to work with a nutritionist to ensure that I am getting all the nutrients I need. I will also likely start a regimen of fasting for a day here and there which has proven very successful in weakening cancer cells. The idea behind all of this is that cancer cells, unlike all the other cells in your body, rely solely on glucose for energy so we are basically trying to starve them without starving any of my other cells, which can get energy from fat. There is a lot of controversy out there about whether or not this actually works and it seems to work for some cancers and not others. I have always had blood sugar problems so for me this feels, intuitively, like a good direction for my body to go in. I’ll try it until I have my next scan around February to see how we are doing.

I will also be adding a handful of treatments that I had stopped, mostly for financial reasons, and will be starting a few more affordable treatments as well. These include things like mistletoe injections and concentrated frankincense capsules (basically I’m turning my body into a holiday party!), both which have some medical evidence backing their anti-cancer properties. I will also be doing more energy work to get the good chi flowing through my system, exercising more regularly and meditating daily to calm my nervous system. Leave no rock unturned is my philosophy. I’ll be updating my treatments page soon so you can see the full list of cancer fighting goodies in which I’ll be investing!

What I don’t know is whether or not any of these things will work, whether they will keep me stable, wipe my cancer out completely or make no difference at all. I’m also not 100% certain how I will afford all of this as we are estimating all of this costing roughly $200,000 in the first year as almost none of it is covered by insurance (a lot of the drugs I take are being used off-label and/or are still in clinical trials that I don’t qualify for, so some I am getting through compassionate care but have to pay for them myself and none of the alternative treatments or supplements are covered).

Because we are asking for so much support from folks I feel the need to be as transparent as I can and say that we are most definitely partially relying on the generosity of many individuals through things like my GiveForward site. We are also trying to come up with creative ways for folks to get something out of giving like this Etsy store I set up or this jewelry sale a friend set up for me. Some of my musician friends are also auctioning off items and my friends in Michigan are hosting a benefit concert for me tonight. So there are many ways that folks are giving and being extremely generous. Andrew and I also, of course, are trying to scrimp and save as much as possible. We are essentially devoting one of our salaries to our everyday existence and one to medical treatments at this point. We got a little money from the sale of our house and I am trying to pick up my photography business a bit again to earn a little extra income. And finally, we have some close friends and family who have generously offered to help us make ends meet when things get too tight for us to manage anymore. So I am confident that somehow we will get through. I’ll also say that we are being as creative as possible so we can still live our lives. Spending money on high quality is food is of the utmost importance to me as food is really the best medicine a body can get. And I still want to be able to spend time with friends and family so we have developed a lot of tricks like charging all of my treatments to credit cards with great rewards so we can get free flights and things like that. I am extremely lucky to be able to afford, what I hope, will be life-saving treatments, but at the end of the day they aren’t worth anything if I don’t have any life left to live. It just takes a little creativity sometimes!

So that’s what I’m unsure about but here is what I do know: I know I have hope. I have lots of hope and I’ll hold on to it for as long as I can. I believe in my team of healers and I believe in my treatments, even with this progression. I feel like I am adding and changing enough that we could still see a major impact. None of my oncologists see this latest progression as an emergency situation that requires drastic or immediate action. Nevertheless I am taking some fairly drastic and very immediate actions to try and reverse this. I know I am a fighter and I will keep on fighting for as long as I can.

I also know that it will be difficult. My regimen requires a tremendous amount of time. It’s nearly a full time job between doctors’ appointments, treatments, taking pills, making food, etc. I spend hours every day dealing with cancer stuff. I will get tired. I will get cranky. I will be jealous of everyone eating Christmas cookies. I will have moments where I succumb to how unfair it all feels. I will get overwhelmed. I will get depressed. I’ve been doing this long enough to know that despite how some people might imagine me, I do not and will not be able to get up every morning and jump out of bed with renewed determination and vigor shouting to the heavens about how I’ll crush this cancer. This kind of work is exhausting work. I will need your understanding on the days when I’m just plain tired.  People often tell me how strong I am but I guarantee that I have a million moments of weakness and that I am just as strong as you would be if you were in my shoes.

I also know that the most important thing is my life, right now. My future is far from being guaranteed so it’s not a place I can spend a whole lot of time in. What I can do is live here, right now, with all of you wonderful people. When I was first diagnosed with a recurrence I turned into a shut-in, unable to interact in the world of the living when I felt like the walking dead. I don’t feel that way anymore. I’m alive. I’m Katie. I’m still here, doing my thing, and I get to spend my time with you and that’s all that matters right now. More love, more moments, more living: that’s all I need. So I’ll treat the crap out of this cancer, I’ll throw everything I’ve got at it, I’ll take it on like I’ve never taken anything on before, but all of that isn’t meaningful unless I get to really live my life in the meantime.

So that’s the update. I’m here. You’re here. And “it’s a beautiful glass.”

With an absolutely incomprehensible amount of gratitude and love,

Katie

Once again, here are some ways you can help:

Donate directly on the GiveForward page

Shop on my Etsy site

Shop on my friend’s jewelry page

Bid on this Freelance Whales auction item